Here's my story. I had weight loss surgery in July (my starting weight was 557) and have lost 160 pounds! I have a VERY large lump on the inside of my right thigh that I always thought was just cellulite. However, after researching online I realized it was a lymphatic pseudotumor. When I went through the procedure of getting the surgery I visited a lymphedema specialist who told me that I would have to do "a few treatments" and that combined with weight loss would "get me back to normal in no time." Well a few months after the surgery when I had fully recovered I went back and spoke with a different therapist. She basically told me I'd have to come in and get wrapped and massaged for 1 1/2 hrs 5 days a week for anywhere from 2 weeks to 6 months, in which case I wouldn't be able to wear a shoe or pants, and then we would move into the maintenance phase. Well there's a multitude of problems with that solution...

A) My job would never allow that kind of time off work

B) My co-pay for this place is $50 per visit, so $250 a week is not possible in any way whatsoever

I left there feeling more hopeless and lost than I've ever felt. I just got married to a beautiful woman in November and this thing on my leg is the only thing preventing me from having an idyllic life.

I saw the episode of that show Heavy where that guy had his lump (which was very similar to mine) removed and it gave me a little hope, but a lot of the online research I've done about surgical removal seems to recommend against it. I need some answers please.

What you have sounds like it should be called "localized lymphedema" and is actually becoming quite common with besity.

There is some discussion as to the best approach in handling this.

Some indicate that surgical correction would be the best option, while others (therapists) believe they can MLD/wrap it away.

The bad thing about going the MLD route is exactly what you said. It takes a very long time, and is costly in terms of the visit copay.

I'll be honest with you. I am against these "surgeries" that supposedly help do away with general lymphedema. But, as for the localized lymphedema tumours I have taken the position that between a patient, their doctor and their therapist surgery seems to work with most of them and as far as I know without major complications.

I saw that episode of Heavy as well. Infact, I have tried to watch all of them and am really floored at the amount of secondary lymphedema in the patients there. I just wish for regular LE that they would give more info about MLD/compression garments,

If you and your medical providers seem to think the surgery would be the best route, then I would probably go ahead and do it. Just make sure the doctor (surgeon) knows what the heck they are doing. This includes having you on a solid course of preventative antibiotics well before you are operated on.

I had the same problem (large pseudo tumor) on one of my legs. Check out this forum’s Personnel Stories section (My Battle with Lymphedema, posted Feb 19, 2010) to see how I was able to deal with it.

Here are my thoughts on some of the issues you raised. Just a caveat—I’m a patient, not a trained therapist.

--Make sure you truly have lymphedema. Do you have swelling in one or both legs, other than the pseudo tumor?

--I found that surgeons would not want to try removing a tumor like this while it was inflated. The recommended course of treatment was MLD (wrapping, massage, etc) to deflate the tumor. Once it was deflated and has stabilized, cosmetic surgery might be done to remove the excess skin (could further damage the lymphatic system and cause more problems.)

--Dealing with a large tumor isn’t the most common issue for lymphedema therapists. May damn sure you have an excellent one who’s successfully handled this kind of thing before spending your $$

--Getting your lymphedema under control with probably take between 2 to 6 weeks (probably the high end of the scale)

--You may be able to get away with seeing the therapist 3 times a week after the first few weeks if your wife (or other family member, friend, etc) is training to bandage your leg(s).

--If the lymphedema is only in 1 leg, treatment should take less than 1 ½ hours per session

--Try scheduling appointments before or after work. See if your work will let you adjust your hours during your course of treatment.

--You should be able to wear pants during treatment (larger size). Shoes…probably not. You may have to wear cast shoes.

--If the lymphedema clinic you’re attending is associated with a public hospital, see if they offer any sort of financial assistance…many do.

I hope this helps. My last piece of advice is deal with this now. It will only get worse and be a bigger and more expensive problem if you wait.

I had the same problem (large pseudo tumor) on one of my legs. Check out this forum’s Personnel Stories section (My Battle with Lymphedema, posted Feb 19, 2010) to see how I was able to deal with it.

Here are my thoughts on some of the issues you raised. Just a caveat—I’m a patient, not a trained therapist.

--Make sure you truly have lymphedema. Do you have swelling in one or both legs, other than the pseudo tumor?

--I found that surgeons would not want to try removing a tumor like this while it was inflated. The recommended course of treatment was MLD (wrapping, massage, etc) to deflate the tumor. Once it was deflated and has stabilized, cosmetic surgery might be done to remove the excess skin (could further damage the lymphatic system and cause more problems.)

--Dealing with a large tumor isn’t the most common issue for lymphedema therapists. May damn sure you have an excellent one who’s successfully handled this kind of thing before spending your $$

--Getting your lymphedema under control with probably take between 2 to 6 weeks (probably the high end of the scale)

--You may be able to get away with seeing the therapist 3 times a week after the first few weeks if your wife (or other family member, friend, etc) is training to bandage your leg(s).

--If the lymphedema is only in 1 leg, treatment should take less than 1 ½ hours per session

--Try scheduling appointments before or after work. See if your work will let you adjust your hours during your course of treatment.

--You should be able to wear pants during treatment (larger size). Shoes…probably not. You may have to wear cast shoes.

--If the lymphedema clinic you’re attending is associated with a public hospital, see if they offer any sort of financial assistance…many do.

I hope this helps. My last piece of advice is deal with this now. It will only get worse and be a bigger and more expensive problem if you wait.

I just went back and read your story that you posted and ironically enough the Gwinnett Rehab Center is where I went. The therapists there were super nice but like I said, there is simply no possible way I can afford the kind of treatment required to be successful with that avenue. Even at 3 visits per week, it's just not possible. I'm supporting myself, a wife who's a full-time student, and an elderly mother who has plenty of health issues of her own and no insurance, so money couldn't possibly be tighter than it is

I could work around the work scheduling if I had to. I just have no idea what to do about the money.

My husband is currently suffering from a lymphedema on his leg that is roughly 75 pounds. It keeps him from moving easily, he can barely fit in the car and clothes are difficult to find. He weighs approx 600 pounds and needs gastric bypass, but they wont do it until he is down to at least 550. The quality of his life is nothing at this point and we can not find anyone that will/can help. Sorry you are suffering, but hope it helps to know you are not alone. How the heck did the guy on tv get his removed??

brendaluvsgarth wrote:My husband is currently suffering from a lymphedema on his leg that is roughly 75 pounds. It keeps him from moving easily, he can barely fit in the car and clothes are difficult to find. He weighs approx 600 pounds and needs gastric bypass, but they wont do it until he is down to at least 550. The quality of his life is nothing at this point and we can not find anyone that will/can help. Sorry you are suffering, but hope it helps to know you are not alone. How the heck did the guy on tv get his removed??

Does he have lymphedema all throughout his leg or just in the one spot like mine is?

He doesn't have experience with it specifically, but does not about lymphedema as does his nurse. But, what he would do is talk with you, see whether or not he is comfortable or not and he has no problem in reaching out to other doctors. In my case, he was in constant touch with Dr. Stewart in Alabama.

I also recommend him though because he is so keenly interested in helping his patient, he cares a tremendous amount for us and his surgical skills are top notch. I have just felt really safe with him too.

If AtlantaMary knows of someone else in the area, hopefully she will share it.

his lymphedema is only in his right leg. Fortunately. Doctors dont seem to know how to deal with it and dont want to take risks on people his size. (which is how it got to grow to this size) Definitely not an easy situation for any of us

brendaluvsgarth wrote:his lymphedema is only in his right leg. Fortunately. Doctors dont seem to know how to deal with it and dont want to take risks on people his size. (which is how it got to grow to this size) Definitely not an easy situation for any of us

Is it localized in one spot like mine or is it spread all throughout his leg? I only have it in that one lump, the rest of both of my legs aren't affected.

The guy on TV had it surgically removed, at least that is what they said on the show.

I curious like knock out, does your hubby have only a localized LE area or does it effect his entire leg.

Brenda, if it is localized LE, it can be removed surgically. But if the LE effects his entire leg, please what ever you do don't allow the doctors to do what is called a "debulking" surgery on it. I had several back in the early 70's and I've been kicking myself every since. Horrible experience and surgery and has done nothing but create more problems for me.

I even wonder if those surgeries may have triggered my lymphoma. The lymphoma started in the leg that I had the surgery on.

Remember for lymphedema that extends over the entire limb, whether arm or leg there just is nothing that can replace what is called manual lymphatic drainage or complex decongestive therapy done by a qualified lymphedema treatment therapist.

BTW, Knockout if you ever have problems with cellulitis or other infections with your LE, I have a really great infections doctor - for years now:

Before I went to him, I was in and out of the hospital so many times with cellulitis. These were brutal episodes and even a couple time became systemic. Once, I had to be on IV antibiotics for four solid months before we finally knocked out the infection.

He then put me on a daily preventative course of bactrim. That was several years ago and since then I have had only a few very minor episodes. Plus, he and his staff knows about lymphedema.

My husbands lymphedema is only in one place on one leg (his right) the mass extends from kind of behind his knee, kinda thigh area, to almost his ankle. It is huge. It needs to be surgically removed, but no one will do anything until he has stomach stapling surgery. It grows. He loses weight. It grows more. He is almost house bound. We are so discouraged

brendaluvsgarth wrote:My husbands lymphedema is only in one place on one leg (his right) the mass extends from kind of behind his knee, kinda thigh area, to almost his ankle. It is huge. It needs to be surgically removed, but no one will do anything until he has stomach stapling surgery. It grows. He loses weight. It grows more. He is almost house bound. We are so discouraged

I'm right there with you. Since I had my VSG surgery (vertical sleeve gastrectomy) in July I've gone from 557 to under 400 pounds. This lump is the only thing standing in my way of losing even faster, because now I actually have the mobility and stamina to work out and exercise, but unfortunately this is preventing e from doing that. Where are you located? If you're in the Atlanta area, my surgeon is FANTASTIC and doesn't put a number on the amount of weight you need to lose before he operates, although with higher BMIs like mine was he said he felt more comfortable with the less invasive and risky VSG rather than the Gastric Bypass. I have nothing but positive things to say about my experience with weight loss surgery but I can tell you the lump will not reduce from weight loss. 160 pounds later and mine is larger than it was prior to my surgery.

Would he be comfortable with you posting a photo like I did? I'm really curious and frankly quite relieved to be interacting with other people who are sharing/have shared this struggle. Finding people with any knowledge of this situations, medical professionals included, has been very difficult for me.

Regardless, just know that there is hope and light at the end of the tunnel. I didn't think there was either, but I found some. You will too. I will say, if he "only" needs to lose 50 pounds before they'll operate, ask a nutritionist about a pre-op liquid diet. I had to do one (mainly to shrink my liver so that it was less obstructive during surgery) and I lost something like 22 pounds in a week. It's hard and awful and all those things, but I promise it's not worse than what he's going through right now.

Patoco, thanks so much for the doctor recomendations. Luckily I haven't had any problems with cellulite yet, that's one bullet I've dodged fortunately.

Mary, did your lump truly deflate after 5 or so days? I know you said you were fitted for compression garments and continue treatment but that is for your primary LE correct? Has the lump reoccurred at any point? If that is the case I could suck it up and pay for a week or two of therapy. I was really impressed with Sam, but the minute I found out the monetary commitment I'd have to make I got crushed by my own discouragement and have yet to return.

I can't say what these few posts have meant to my hope and morale. I appreciate everyone's imput greatly.

The tumor did only take a few days to deflate (don't remember if it was 5 days or a bit longer). But, I was left with a lot of excess skin and tissue that was quite heavy. It kind of looked like a deflated hot air balloon that had been laid on its side! After a few more months of wrapping (which your wife could help you with), a great deal of the tumor reabsorbed into my leg. I don’t want to mislead you….you certainly can still see some excess skin, but the difference is shocking.And, yes, it does refill a bit (on one side) if my bandages get too loose (I’m talking about filling up ¼ to ½ an inch.) This disappears once the bandages have been replaced.I’m still getting wrapped a few times a week because compression garments don’t really work for me (they tear my skin). I have trouble wrapping myself because of other issues (one of my knees doesn’t bend). One thing I’m curious about is whether or not you would have to wrap your leg if the tumor was surgically removed. I’m sure I’d have to because I have LE throughout my leg. But, if I don’t know the answer for a person who only has the tumor and no LE in other places.

My husbands "mass" is roughly twice the size of yours, rock hard, but very similar in appearance. At this point he is not comfortable posting a picture. We are located in Massachusetts, so your referral wont help us unfortunately. How is your weight loss going? Congrats on it so far. Hope to join you on the journey soon

Well, time for some good news------we met with a wonderful surgeon at Brigham & Womens Hospital in Boston (he participated in the face transplant surgery that was done recently) and he agrees that my husbands lymphedema should be removed. He assumes the mass to be approx. 100 pounds!!!! So keep your fingers crossed for us, May 20th is a new BIRTHDAY

My husband had his lymphedema removed on May 20th. Everything went amazingly well. He did not need any blood, he stayed 2 nights and came home with 3 feet of sutures and 2 Jackson Pratt drains. The dry weight of the mass was 48 pounds and he lost another 30 in interstitial fluid. He is already moving better, the drainage is still heavy, but getting better. Hang in there, hope is out there.

I am just so frustrated. We are a few weeks post op now. His drains are still collecting over 500cc of fluid a day. The worst part is that part of his suture line has opened and most of the lower suture line is dripping lymph fluid. DRIPPING!!!!! So his surgeon is leaving the sutures open and he seems comfortable with where we are. We are frustrated. His leg is much better compared to the huge mass, but the drainage is never ending. WILL IT EVER END??????? Please say yes

I'm just not so sure I would have taken out the sutures yet. With my lymphedema, they tend to stay in longer. That fluid is what's causing the suture line to open. It is so caustic to the skin tissue it comes in contact with. My surgeon also has actually used lasers to seal of areas he has taken a biopsy of or removed growths. I was amazed at how well this worked. Sealwed those open areas right up.

He should heal though, it is just going to take a long time. He must keep that leg elevated, stay off it. Keeping it up should help keep the dripping fluid from becoming too much. When my legs start that draining that LE'ers get, when I elevate them, the dripping gradually stops.

This is going to be the hardest time for you as lymphedema wounds, surgeries etc just take forever to heal. Hang in there and try as best you can to keep those spirits up.

his surgeon didnt take any sutures out, he just didnt RE suture the part that has opened. The drainage is just sooooo massive and the smell is horrible!!!! No infection luckily (he is still on an antibiotic) but I change his dressings twice a day, using overnight tena pads (more absorbent than gauze and abd) and the visiting nurse comes every other day. She is going to have a wound care nurse come by and look at it too. Over night last night, for the 1st time, he only had 50cc of fluid in his drains, but his dressings were still soaked. So maybe its going to end???? Maybe???

The decrease is super good news, Brenda. You my want to think of changing those bandages three times a day. Try as best you can to limit how much of the fluid stays on the leg. having a nurse come in can help, if they know lymphedema. Just be careful on that. I had a couple coming in in 2007 and frankly they were more of a hassle then help. LOL..but then maybe they were thinking that of me. Maybe a wound care nurse will be helpful.

That fluid really does smell. It just got so much waste garbage in it, proteins etc. Hard to get used to. BTW, it is called lymphorrhea.

His drains finally came out on Wednesday!!! YAY! The suture line is open 6 inches and draining PROFUSELY and I was wondering if there is something I should/shouldnt be doing. We are using Tena overnight pads, with a smaller pad inside and changing it 3 times a day. On top of it, we are changing the reusable underpad on the bed 3 times a night. AHHHHH!!!! Tell me this will end. It is so frustrating for both of us and I am desperate for anyone that can relate, or give tips, support.......etc

Brenda we appreciate your for sharing your husband's problems. My lymphedema problems seem so small compared to his. You are so wonderful to be so supportive of him. He is blessed to have you in his life. If you use outside nurses be sure that they wear gloves. They have been treating other patients in their homes. You don't need problems with infection carried into your home.Betty

Betty, It is impossible to say anyones's suffering is greater, if you suffer, thats all that matters. My husband and I are in this together, although I must say, it isnt easy. I Wish I could see and end in sight. Or that anyone has been where we are and came out the other side. Right now, today is the same as last week and for all I know, the same as next month. The thought of that is so depressing to me. Worst of all is the cost. He hasnt been able to work in months, GOD knows when he will be able to work again, and we struggle desperately to just make ends meet. We have medical insurance, but they dont cover all of the supplies we need and certainly not the quantity we need them in. We spent $75 on tape alone. And then we found we needed something more absorbent than ABD pads, so I bought overnight TENA pads. Work better, but another out of pocket cost. All of this is so physically and emotionally draining. But we are better off than we were a month ago and I am grateful for that. So I will do what I can for my husband and together we WILL find the way. GOD has a plan and who are we to ask "Why me?' WHY NOT ME?? Prayers to you in your journey~~~~ Brenda